MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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I was wondering if there is anything I should know before getting a port? Basically I understand it is a minor surgery. They put the thing in under my skin. It attaches to a vein that they said goes to my heart. It's under the skin so no problems with showering and things. After the surgery heals there should be little risk of infection. They can puncture the silicone thing hundreds of times so I can get my medicine and blood work that way now. It's just a little bump under the skin.

Just wondering if there is anything I should be concerned about getting a port? I also plan to have radiation to my left collar bone and left shoulder tumors. I don't know if the collar bone tumor would be in that area where the port is and could cause problems with it or not. Or I guess according to the wikipedia picture it would be further down but not sure.

I've only had 10 doses of pd1 but combine that with 4 doses of ipi and countless blood draws and scan sticks they have a really hard time getting the iv in for my pd1. They did get it the first try today but it hurt like crazy and would still hurt if I hadn't taken my pain pills for that, my leg and shoulder pains.

Artie

 

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Rudy is still doing well and taking it one day at a time.  He is still on combo two weeks on, one week off and continues to take a maintenance dosage of cannabis oil daily.  I try to check this site at least once a week. I used to be a daily visitor but I am now trying to spend as much time living in a world outside melanoma and enjoying this time that my husband remains NED. As you all know, once you/or your loved one is diagnosed with melanoma you become part of the community of fighters and their loved ones and at least for me, it's impossible to forget that so many are struggling for each new day. Please know that I pray everyday for all afflicted with this dreadful disease as well as for their families.

Blessings, love and best wishes to you all! 

Gina

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/25/2014 - 8:57pm
Replies by: Happy_girl

HI Everyone,

I am a stage IV patient currently NED 13 YRS AND 9 MONTHS  MPIP was a saving grace for me for sooooo many years and I hope all of you will find the love and support I found here.  I am still in touch witih many patients and caregivers I met here  We formed a bond of a lifetime together,

MPIP is a place to find a WEALTH OF INFORMATION,,  IF you have any questions ask JANNER or Jerry from Fauquat,  They know more than most doctors  lol  not kidding,  

Please do yourselves a favor and start the chat room going again, It was incredible support.  I am now on FB as well and I love love love beign there,  All of that being said...... THERE IS NO PLACE LIKE MPIP  You will get to know one another, your stories, your journey and you will form friends for a lifetime  

As difficult as Melanoa is , please look for the gifts,  there are many,

MELANOMA BROUGH BE TEARS

MELANOMA BROUGHT ME FEARS

MELANOMA BROUGHT BE SORROW

MELANOMA BROUGHT ME PAIN

MELANOMA BROUGHT ME HEARTACHE

MELANOMA BROUGHT ME ANGST,

MELANOMA BROUGHT ME ISOLATION

MORE IMPORTANTLY

MELANOMA BROGH ME SMILES

MELANOMA BROUGHT ME LAUGHTER

MELANOMA BROUGHT ME JOY

MELANOMA BROUGHT ME COURAGE

MELANOMA BROGHT ME STRENGTH

MELANOMA BROUGHT ME FRIENS

MELANOMA BROUGHT ME LOVE

MELANOMA BROUGHT ME FAITH 

MELANOMA BROUGHT ME BLESSINGS

MELANOMA BROUGHT ME PEACE

MMOST IPORTANTLY 

MELANOMA BORUGHT  ME THE OPPORTUNITY TO MAKE AMENDS TO THOSE I HAVE HURT

MELANOMA BROUGHT ME THE OPPORTUNITY NOT TO LEAVE ANY UNANSSWERED QUESTIONS FOR MY CHIDLREN

MELANOMA BROUGHT ME ACCEPTANCE

WHAT MORE COULD I ASK FOR

BIG HUGS EVERYONE.

LOVE AND LIGHT

CAROLE K 

STAGE IV  iT'S A BEAUTIFUL DAY!!! I OPEEND MY EYES TODAY!!!!  

 

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Jubes's picture
Replies 2
Last reply 11/25/2014 - 7:48pm
Replies by: arthurjedi007, Linny

I have been diagnosed with  stage IV in my lungs and lymph nodes and the doctors can't find the primary. In 2005 I had an amelanotic hutchinsons freckle removed. I had had it on my left upper arm for 2 years and various Drs told me it was nothing until I changed dermatologist. By then it was about two inches diameter        After that I was checked regularly for new melanomas and the dr always checked the glands in my armpits but that was it. Is it possible that I have had this melanoma for the past 10 years? My current oncologist thinks it unlikely that hutchinsons freckle was the primary but just wondering if anyone else had had that type of thing?

thanks

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janetd's picture
Replies 10
Last reply 11/25/2014 - 1:48pm

HI,

I am hoping that I will gain knowledge, and support from others in this forum.  My husband just passed his 5 year mark from Stage 3 lung cancer.....I am hoping I too can say that one day.....although today i received some lousy news.

I could really use some words of encourgement or thoughts from those of you in similar situations.

Here is my story:

Sept- 2013-  Ok, I'll come clean here....I had decided to treat myself to some cosmetic surgery......i had a face lift and during the pre-op appt i asked the Plastic surgeon to remove something on my neck......never thinking it was anything, since i go to the DERMATOLOGIST regularly, every 3 months due to my history. 

When I went back for my first POST-Op appt, i was told that what he'd removed was 1.5mm melanoma.....amelanotic.....though the normla protocol would ahve been to have sentinel node biopsy I was told i couldnt have one since all the lymphatic drainage patterns in my neck would have been too greatly altered....I saw 3 surgical oncologists and ALL told me based on the size it was a very low risk that would have gone into a node....so I ahd the WLE and have been following up with SLOAN in NYC with ultrasounds of my neck every size months......Just passed the first year mark and all WAS ok.

Lst week i felt 2 small pea size lums under the skin on my neck....in the ame spot as the original one and about and inch or 2 away. Today I received the phone call confirming they were both Melanoma.

I was devastated when told that made stage 4A.......from stage 1 to 4.....skipping all in between.

Tomorrow I am having a brain MRI, followed by CTs with contrast on NECK, CHest and Abdomen on Wed.

Then scheduled to see surgeon and oncologist next wed and thursday.

I am not reading the statistics as i know they are grim and very old, before the new drugs recently approved.

BUT it would very helpful if i could hear a few longer term STAGE 4 survivor stories.....of course i don't know yet if it has spread beyond these addtioanl skin mets, but of course hoping for good enws after scans.

Hoping to hear from someone!

thanks,

janet

 

 

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Jubes's picture
Replies 4
Last reply 11/25/2014 - 5:51am

HI All,

Has anyone who is on Pembrolizumab or Nivolumab noticed any changes in their memory?

I have had 4 cycles of Pembrolizumab and am feeling really good. I have previously done Dabrafenib and Ipi and the tumours increased in size on both of those. I am stage 4  in my lungs with unknown primary. Recently I have noticed that it sometimes takes me a few minutes to remember what i have been doing in the last couple of days. The drug company does not list any such neurological side effects, so it is possibly unrelated or stress related, or that I am not at work with my usual schedule. Just wondering if anyone else has noticed anything similar?

Thanks

Jubes

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SarahW's picture
Replies 4
Last reply 11/25/2014 - 8:48pm

My husband has an appointment with radiation oncologist re: 3 new brain mets, all < 1 cm. He has already had Stereotactic Radiation Surgery on 8 previous brain mets on two separate occasions. 

Wondering how many times this procedure can be performed. What has your experience been?

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Kmiles's picture
Replies 7
Last reply 11/25/2014 - 3:23am

Diagnosed w melanoma at the end of October. T3 3.25 and Clark level 4.  

Ok so WEL/SNB were completed on Thursday.  Ended up both underarms were done.  My back feels fine but wow, underarms are tough!  Doctor says I can't wear a bra or deodorant until post op. 

How do you do this in the business world?  I went out and bought big button down shirts and sweaters.  Do people stay home or go to work?  I have long term sick/short term disability insurance but I don't know if this is appropriate or not.  

Ant practicle advice is truly appreciated!  

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JerryfromFauq's picture
Replies 5
Last reply 11/25/2014 - 6:49am

Melanoma Vaccine has been approved for Dogs, now it lookes like one is coming for horses as well.          
http://www.abcactionnews.com/news/health/morphogenesis-announces-usda-sa...
 

I'm me, not a statistic. Praying to not be one for years yet.

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Jewel's picture
Replies 5
Last reply 11/24/2014 - 4:18pm

Hi,

My husband just recently started Yervoy, he is getting 300mg, he is 220lbs. Is there data out there to show the difference in reponse between the two doses. It seems like your longer responders were on the 10 mg? Thanks for any and all info.

Jewel

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Replies by: Squash

I have read on closed boards lately about also many people being told they are over reacting by being worried about their skin cancer diagnosis.  After all melanoma is just a skin cancer and there have been so much advancement that we shouldn't really worry aabout  it.  Here is some comments I have to make about the optomisim in the latest article I have seen. 

MY OPINION - I have a couple of qualifications that I think apply to the optimism of this article. http://www.medscape.com/viewarticle/835282?src=stfb

I have a couple of qualifications that I think apply to the optimism of this article.  I do not mean to cause anyone to not have hope, it is just that articles like this present a false picture of where the overall melanoma treatment world is today..------ Please read thd complete article and my response before attacking my OPINION.

The title of the article ''We Have Cure in Our Sights'” is not exactly what the Oncologist asked.-----
“He asked : "Can we now cure an incurable disease in some of our patients with metastatic melanoma?" ----

I do not know if things were so much better in Australia than they were in the US in previous days,but.

-----------The article says that about 1/3rd of Dacarbazine (approved 1975) patients would be alive after a year of treatment with this drug.

-----------Responses seen with interleukin-2 (aldesleukin), approved in 1988. has a one-year survival rate of 46%. IL-2 was approved by the FDA for renal Cancer in 1992 and for Melanoma in 1998 and had a positive response benefit in 15-23% of Stage IV patients receiving it (a 5-8% complete response without ever having a recurrence). Most never got it because either they did not qualify for it and also most Oncolgists were not experienced with using it..

------------The statistics that were available when I went to Stage IV in Feb 2007 said that with treatment that there was about a 75% chance I would not see a year of survival.

------------Article says “The data on ipilimumab out to five years show that about 20% of patients become long-term survivors, “ Again to the uninformed this appears to say that 20% of melanoma patients are long term stage IV survivors. It does not point out that these statistics really only apply to 20% of the 25% of people that may respond to the Yervoy (Ipilimumab) in the first place. This actually is 5 out of a 100 stage IV patients.

------------The data ”nivolumab (Opdivo, Bristol-Myers Squibb), which has reported one-year survival rates of 73%, and for another combination of a BRAF inhibitor with a MEK inhibitor, vemurafenib with cobimetinib, with a one-year survival rate of 83%.
------------ The positive response (not long term nor cure rate) to Opdivo is around 50%. so while 73% of 50% is 36.5% for a one year survival, this is good, but still a long ways from a general melanoma cure. The same for the 83% of 50% for the one year survival of the BRAF/MEK combo.

Yes, we should have hope with the Improvement in these numbers from where I started, but “CURE??” for overall “melanoma"? ------------ MUCH more work to be done.
-------------------------------------------------------------------------------------------------Why shouldn't even our family and friends that read such articles think we are over-reacting to our diagnosis?-----------------

 

I'm me, not a statistic. Praying to not be one for years yet.

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I have read on closed boards lately about also many people being told they are over reacting by being worried about their skin cancer diagnosis.  After all melanoma is just a skin cancer and there have been so much advancement that we shouldn't really worry aabout  it.  Here is some comments I have to make about the optomisim in the latest article I have seen. 

MY OPINION - I have a couple of qualifications that I think apply to the optimism of this article. http://www.medscape.com/viewarticle/835282?src=stfb

I have a couple of qualifications that I think apply to the optimism of this article.  I do not mean to cause anyone to not have hope, it is just that articles like this present a false picture of where the overall melanoma treatment world is today..------ Please read thd complete article and my response before attacking my OPINION.

The title of the article ''We Have Cure in Our Sights'” is not exactly what the Oncologist asked.-----
“He asked : "Can we now cure an incurable disease in some of our patients with metastatic melanoma?" ----

I do not know if things were so much better in Australia than they were in the US in previous days,but.

-----------The article says that about 1/3rd of Dacarbazine (approved 1975) patients would be alive after a year of treatment with this drug.

-----------Responses seen with interleukin-2 (aldesleukin), approved in 1988. has a one-year survival rate of 46%. IL-2 was approved by the FDA for renal Cancer in 1992 and for Melanoma in 1998 and had a positive response benefit in 15-23% of Stage IV patients receiving it (a 5-8% complete response without ever having a recurrence). Most never got it because either they did not qualify for it and also most Oncolgists were not experienced with using it..

------------The statistics that were available when I went to Stage IV in Feb 2007 said that with treatment that there was about a 75% chance I would not see a year of survival.

------------Article says “The data on ipilimumab out to five years show that about 20% of patients become long-term survivors, “ Again to the uninformed this appears to say that 20% of melanoma patients are long term stage IV survivors. It does not point out that these statistics really only apply to 20% of the 25% of people that may respond to the Yervoy (Ipilimumab) in the first place. This actually is 5 out of a 100 stage IV patients.

------------The data ”nivolumab (Opdivo, Bristol-Myers Squibb), which has reported one-year survival rates of 73%, and for another combination of a BRAF inhibitor with a MEK inhibitor, vemurafenib with cobimetinib, with a one-year survival rate of 83%.
------------ The positive response (not long term nor cure rate) to Opdivo is around 50%. so while 73% of 50% is 36.5% for a one year survival, this is good, but still a long ways from a general melanoma cure. The same for the 83% of 50% for the one year survival of the BRAF/MEK combo.

Yes, we should have hope with the Improvement in these numbers from where I started, but “CURE??” for overall “melanoma"? ------------ MUCH more work to be done.
-------------------------------------------------------------------------------------------------Why shouldn't even our family and friends that read such articles think we are over-reacting to our diagnosis?-----------------

 

I'm me, not a statistic. Praying to not be one for years yet.

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JustMeInCA's picture
Replies 12
Last reply 11/25/2014 - 4:09pm

Hi, all -- still struggling with my 83-year-old dad's pain management. He was taking 15 mg Oxycodone as needed for pain because he didn't want the 12-hour Oxycontin, but that wasn't helping and he lost about 6 lbs. between his first and second infusion, I think because he didn't have much appetite due to the pain.

He started on Gabapentin (Neurontin) for the nerve pain, titrated that up from 300 mg to 600 mg only at night the past couple weeks (eventually aiming for 900 mg) and then added 20 mg Oxycontin about four days ago. He's had no issues with the Gabapentin, but the Oxycontin has had the zombie side effect -- he's barely left his recliner between his 6-hour naps! I lowered it to 10 mg today to see if it helps the side effects to move up more slowly.

At any rate, he was on the phone today with one of his childhood friends who battled another form of cancer last year. She told him to use cannabis, as that was the only thing that really helped her pain without knocking her out. (It's amusing to me that these two 80-somethings are having this conversation!) At any rate, Dad reported back to me that it's time for him to try marijuana -- I don't think he was completely serious, but it got me thinking.

We're in California, so medical marijuana is legal here, but I would have no idea where to start to find 1) a prescribing doctor (since I doubt the doctors at UCSF or his primary care doctor would prescribe it), and 2) the type and dosage. I did a search and saw that several people are using cannabis oil, so I'm just wondering if anyone (especially anyone in California) could give me some guidance. I've read that it has been shown to help with tumors, but I'm particularly interested in the anagelsic effects since Dad's having such pain.

I'll ask his oncologist about it next week, but I expect this is something we'd have to do on our own. 

Thanks!

Elaine

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Replies by: Maureen038, kylez, RJoeyB

Hi everyone, 

     It's been awhile since I've posted, but I do read MRF every day and my heart goes out to the people who have died or are struggling now. My prayers go out to everyone fighting this battle. It's so wonderful to know though that there are so many people who care and truly have wonderful knowledge on this board. Thanks Tim too for providing this format!

     First, thanks Janner for your wonderful advice on my son. His three colorless bumps were nothing. It was incredible news for us!!!!

      My husband had a PET/CT yesterday. He is on the phase one ipi/ nivo trial. He also had TIL therapy at NIH before this trial. We feel very strongly that the combination of the TIL therapy and the Ipi/nivo trail have worked together to help my husband have great results. If you look at Lion Biotechnologies they are running trials with TIL and nivolumbab and TIL with ipi. We truly feel Dr. Rosenberg's work has been groundbreaking in the melanoma world. My husband  has been stage 4 for over two years with nine lung nodules. The scan showed nothing new, but his one nodule grew again from 2.8 x 2.1 to 3.3 x 2.4. cm. The SUV max is 19.2, There are two lung nodules that are about 7 mm with no FDG uptake. There are a few very tiny nodules that have a SUV max of 3.5. It seems that some nodules have disappeared. This is all fantastic news except for the one nodule. Our concern is that Dr. Kirkwood at UPMC has discussed before that he can have the one nodule taken out, but BMS has to agree to it for him to continue on the trial. My husband was almost taken off the trial in June and I want to make sure there's no problem at our appointment  on Monday in Pittsburg. Does anyone have a scholarly article I can use in case we have to argue our case. Thanks from the bottom of my heart!!

Maureen

      

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